What do children need to know about dementia? The perspectives of children and people with personal experience of dementia

Background: The vision for dementia-friendly communities is challenged by limited public awareness and stigma about dementia. The study aim was to elicit stakeholder priorities for the message content of an education program to improve dementia awareness among youth; specifically, what do children need to know about dementia? Methods: A qualitative inquiry using interviews and focus groups was used. Purposive sampling achieved maximum variation in dementia experience and participant characteristics. Focus groups with Scouts in the community aged 9-12 years old (n = 22) used innovative techniques to explore children's attitudes towards people with dementia. Participants with personal experience of dementia were five people with early-stage dementia; 12 adult primary carers; four non-primary carers; and six grandchildren of a person with dementia. They were asked what is important for children to understand about dementia and what attitudes they may like an education program to confer. Content analysis was performed using NVivo10. Results: Strong themes to emerge were that children need to know the whole truth about dementia; that individuals with dementia are "still people," that it is "not the fault" of the person with dementia; and that dementia is different and typically unpredictable for everyone. Discussions also indicated a need to educate children about ways to relate to a person with dementia, and to appreciate "positives" within a relationship. Conclusions: Children are our future citizens. Developing an education program for children with this message content may be fundamental to de-stigmatizing dementia and laying the foundation to dementia-friendly communities.